Overview of equality and health inequality issues and dementia...Overview of equality and health...

Overview of equality and health inequality issues

and dementia

Jo Moriarty

Social Care Workforce Research Unit

‘By 2015 every person with dementia will be able to say’

‘I get the treatment and support which are best for my dementia and my life’

‘I know what I can do to help myself and who else can help me. My community is working to help me to live well with dementia’

‘I wanted to take part in research and was able to do so’

7 May 2014 Equality and health inequality issues in dementia

2

“

”

There are parts of the country where it takes six months to get a dementia diagnosis, which is absolutely scandalous. I want to get to a situation where the average across the whole country is no more than six weeks

Jeremy Hunt, interview in The Telegraph, 27 February 2014

Government plans to improve regional variations in screening


3

Where does this leave us?

• Prime Minister’s Dementia Challenge recognises variations in access to good dementia support

• Focus on regional variations in screening but we need more ‘hard’ evidence on other aspects

• Findings presented here will be familiar but offer a framework for discussions throughout the day


4

• Rationalised existing legislation

• Some new provisions

• Nine ‘protected characteristics’ • age • disability • gender reassignment • marriage and civil partnership* • pregnancy and maternity* • race • religion or belief • sex • sexual orientation


5 Equality Act 2010

Age

• Risk of dementia increases with age

• But increasing numbers diagnosed before age of 65

• Difficulties getting a diagnosis

• Increased stigma

• May face different issues (e.g. employment, young children)


6

http://www.youngdementiauk.org/

Disability

• Office for National Statistics data shows variations by age, region, ethnicity, income

• Concerns about co-morbidities long term conditions

• ‘Diagnostic overshadowing’?

0 20 40 60 80

16-24

25-44

45-64

65-74

75 and over

ONS data on disability 2012

Longstanding illness or disability

Limiting LSI


7

Dementia and learning disability

• Better life expectancy

• Higher prevalence of Alzheimer’s disease among people with Down’s syndrome

• Also higher risk of other health conditions

• Reported incidence varies but as much as 25% in over 60s (Kozma, 2008)


8

Joseph Rowntree Foundation &

University of Edinburgh DVD

Gender

• More women than men have dementia

• May reflect different life expectancy

• AD/VaD similar for men & women until extreme old age (Ruitenberg et al, 2001)

• Others say different prevalence rates (e.g Roberts et al, 2012)


9

Image from Casual Fridays blog

Sharpest differences in care homes?

• More women than men live in care homes

• Women tend to marry men older than them and to live longer

• Poverty rates worse among ‘single’ women households

• About 80% social care workforce are women


10

Image Scottish Parliament website

Sexual identity

• Neglect of lesbian, gay, and bisexual (LGB) sexual identities in research on dementia

• Experiences of discrimination as carers (Price, 2008)

• More research with older LGB people (Guasp, 2011)

• Previous experiences of stereotyping and prejudice major barriers to using services

• ‘de-gaying’ home before visits

Equality and health inequality issues in dementia

11

Image from Alzheimer’s Society website

7 May 2014

Possible inequalities

• Barriers to using health and care services

• Higher proportions of older LGB people living alone (Guasp, 2011)

• Higher proportions of older LGB people living in poverty (Uhrig, 2013)

• US research shows effects on social support mixed


12

But beginning to be addressed

• Dementia Engagement and Empowerment Project (DEEP) has funded new project in Birmingham

• ONS has been testing questions on sexual identity in Integrated Household Survey (2012)


13

Gender identity

• Reminder that gender identity and sexual identity not the same

• ‘Binary’ gender distinctions do not reflect many people’s perceptions of self

• We don’t routinely ask whether people self identify as transgender/intersex/or other identity

• Can surmise there is population of older people who transitioned in 1970s but no data


14

Marginalised

• Differing views as to advantages/disadvantages of LGBT grouping

• Evidence base extremely small for everything, let alone dementia

• Research with transgender people suggests that many people have had experience of discrimination which influences ‘help seeking behaviour’ in old age


15

Some US research

• Conference paper using data from International MetLife Survey on Preparation for Aging in Trans-Identified Populations (McFadden et al, undated)

• Older transgender adults (aged 60 and over) very concerned about developing dementia

• Concerned about intimate care

• Concerned they will be treated in ways not congruent with gender identity


16

Ethnicity

• Present later to services when dementia is more severe (Mukadam et al, 2011)

• Knowledge about dementia appears to be less (Seabrooke & Milne, 2009)

• Stigma may be greater (LaFontaine, 2007)

• Carers may experience particular difficulties (Bowes & Wilkinson, 2003)


17

Image from 2009 Dementia Strategy

Projected increase in numbers of BAME people with dementia

2013

2026

2051

0

50000

100000

150000

200000

25000

50000

172000


18

Religion

• In some instances may be more appropriate to look at ethno-religious groupings (Hills et al, 2010)

• But generally reported in terms of ethnicity

• Risks of stereotyping • In 2001 Census Chinese people were the ethnic

group most likely to say they had no religious affiliation


19

Religion and ethnicity (census)

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Christian Sikh Muslim Jewish Hindu Buddhist Other No religion

White Mixed Asian Black Other


20

Socio-economic status

• Research in this area is mainly from the US

• Suggests there are risk factors related to socio-economic status

• Education as a ‘protective’ factor?

• Poorer physical and mental health throughout the life course?


21

Conclusions

• We have multiple identities so important not to look just at one aspect of ourselves

• Very limited data looking at interactions between different protected characteristics

• Review for Age UK (Moriarty & Manthorpe, 2012) showed data on many characteristics is not collected or not reported

• Considering these factors is an essential step in delivering more person centred dementia care


22

Acknowledgements and disclaimer

The Social Care Workforce Research Unit receives funding from the Department of Health Policy Research Programme. The views expressed here are those of the authors and not the Department of Health


23

© The Association for Dementia Studies

Ethnic Identity and Cultural Diversity in Dementia Care: a Person-Centred Approach

Dr Karan Jutlla

Senior Lecturer

Association for Dementia Studies,

University of Worcester

The National Dementia Strategy (2009)

• A five year plan with the core aim to develop services that ‘meet the needs of everyone, regardless of their age, ethnic group or social status’

• An informed and effective workforce

Key points

• ‘Meet the needs of everyone’: understanding communities

• Translating this into dementia care

• Equality and Diversity is about being person-centred.... isn’t it?

Understanding Communities: Ethnic identity & cultural diversity

• Whilst there are similarities across different ethnic communities, there are also differences both within and across communities based on:

• Religion

• Language

• Migration experiences

• Caste

Caste Castes within the Sikh population in rural Punjab fit into a hierarchy comprising four broad categories. Similar across other South Asian communities (Ballard and Ballard 1979; Kalra 1980): 1. Brahmins and Khatris - high rank priestly class who

traditionally acted as warriors to the Gurus. They comprise approximately ten per cent of the rural population of the Punjab.

2. Jats - the ‘landowners’ and ‘farmers’ and comprise approximately 50 per cent of the rural population of the Punjab.

3. Craftsmen and service caste - comprise approximately 15 per cent of the rural population, of whom the Ramgarhias (carpenters) are the largest group.

4. The ‘untouchables’ - comprise approximately 25 per cent.

Cultural Diversity Illustration

Punjab East Africa

Caste

1 Sikhs Muslims Hindus

Sikhs Muslims Hindus







e.g. Shared

language e.g. Shared social norms

Segregation or Inclusion?

• …Let’s imagine a specialist service

Migration and Dementia

Key Historical Events

Sikh Muslim Hindu

1947 India

1983 India

1960s UK

Others…

Person Centred Guiding Principles (Brooker 2007)

• Do my actions Value and honour the people that I work with?

• Do I recognise the Individual uniqueness of the people I work with?

• Do I make a serious attempt to see my

actions from their Perspective or stand point?

• Do my actions provide the Support for people to feel socially confident and that they are not alone?

Person centred care & Personhood….

Person Centred Care are the processes by which service providers maintain the Personhood of those who receive their services…..

“Personhood is a standing or status that is bestowed on one human being, by others, in the context of relationship and social being. It implies recognition, respect and trust…..”

Kitwood, Dementia Reconsidered 1997

Cultural competency

• For Gallegos et al. (2008:54) cultural competence refers to ‘the process by which individuals and systems respond respectfully and effectively to people of all cultures, languages, classes, races, ethnic backgrounds, religions, and other diversity factors in a manner that recognises, affirms, and values the worth of individuals, families, and communities and protects and preserves the dignity of each.’

Cultural competency cont…

• Involves more than having an awareness of cultural norms. It is an approach that values diversity and promotes inclusivity

• It represents a value-based perspective that recognises individuality (Gallegos et al. 2008)

• Person-centred care

Person-centred care with migrant communities

• In order to achieve ‘mutually satisfying user/provider relationships’ such people should be regarded as individuals alongside knowledge of the social and political influences on their lives rather than regarding them as members of ‘other’ groups (Mackenzie 2007:76).

• Promoting inclusivity in existing services

BAME communities

International Community: Migration

National Community

Local Community

Family

Person

Thank you Dr Karan Jutlla Association for Dementia Studies University of Worcester [email protected] http://www.worc.ac.uk/discover/association-for-dementia-studies.html

http://www.worc.ac.uk/discover/association-for-dementia-studies.html







Equalities in Commissioning

for Dementia

Paul Allen

Older People’s Commissioning Manager

London Borough of Enfield

[email protected]

www.enfield.gov.uk

Striving for excellence

mailto:[email protected]

Basic Facts about Population in Enfield

• 3,050 people aged 65+ with dementia in Borough

• 1,250 with advanced dementia

• Around 70 under 65, majority with learning disabilities

• 41,000 aged 65+ years; 57% female, 43% male

• 5,590 aged 85+ years; 69% female, 31% male

• 7,200 people with 2+ problems in daily living

• Two-thirds of people aged 65+ White British/Irish

• BME populations tend to be concentrated in

specific wards – often more deprived areas

• 28,000 carers, 6,200 providing 50+ hours/week

Basic Facts about Population in Enfield

White British/Irish

68%

Greek/Greek Cypriot

8%

Turkish/Turkish Cypriot

3%

White Other 3%

Black African & Caribbean

7%

Indian 4%

Pakistani/Bangadeshi

1%

Chinese/Other Asian 3%

Mixed 1%

Other 2%

Proportion of 65+ Population by ethnicity (n = 41,000)

Positive Things that have happened

• People’s lives more fulfilling - & disease slowed – if

they get early help & treatment

• Number of people referred to Enfield’s Memory

Service for diagnosis increased by 88% in a year

• Added investment in Service planned in response

Glass Half-Empty? Many challenges remain

• In Enfield, average 42%, but wide variation across

GP practices – 8% to 100% in individual practises

• Know there are barriers to access in health services

& knowledge amongst specific equality groups

Enfield Dementia Action Alliance

Enfield’s response to Dementia Challenge is based on:

• Seeing problem as societal, not simply medical, one

• Coordinating & mobilising individuals & organisations

– to form a partnership approach

• Focus on dementia part of promoting healthy lifestyle

• Independent partnership of private, public & voluntary

sector organisations with aim to improving lives

• Partnership in ideas, support & progress, to ensure

Enfield becomes dementia-friendly community

• Some of most active partners have been specific

community groups promoting issues of dementia

• LBE/CCG invests £3m/year in grants to voluntary

sector – 70+ organisations work with older people

• LBE developed collaborative VCS Framework

Connecting Communities Project

‘In the last months of his life, my dad had Vascular Dementia…in

my community people were saying my dad had gone crazy, and

that the disease was payback for something bad in his life’

• Enfield fortunate to have access to Alzheimer’s

Society Connecting Communities pilot

• Promote dementia-awareness in communities with

potential barriers in knowledge or access to services

• Project worked with 15-20 community organisations,

with 550 attendees at workshops

• Particularly amongst SE Asian, Turkish, but also

African & Caribbean and Greek groups

• Increased referrals to memory clinic from groups

Plans & Challenges

• Enfield partnership submitted bid for Healthy Ageing

Programme for Older People & Social Isolation

• Will develop voluntary sector hub in primary care

alongside statutory sector integrated care solutions

• Will be focus on improving post-diagnosis support

• Collaboration across diversity groups and will also

reach out to those disabled, elderly & frail and carers

• Invest in support for carers later in pathway

• Collaborating with residential/nursing care providers

• Need imaginative ways to reach specific groups,

LGBT community and men in some ethnic groups

• Expected to invest from Better Care Fund

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